Children’s Epilepsy Surgery Service pathway
Welcome to Birmingham Children’s Hospital and The Epilepsy CESS team. This is an example of the typical journey that a child and family make during their time with CESS. Being on the pathway doesn’t mean that you will definitely have surgery, each step taken is to find out more about your seizures and where in the brain they are coming from. From this and in discussion with you and your family we decide what the best options for you are. It can be a long journey, but the CESS team will support you along the way.
Step one
Referral/Prelim MDT
Your doctor will have sent a referral to the CESS consultants. They will review your information and request any outstanding investigations that are required for the referral. They will discuss your case in a Preliminary Multi-disciplinary team meeting (MDT) with several professionals who will decide if you are a potential candidate for surgery.
Step two
Investigations
Following the Preliminary MDT you will receive a letter explaining the outcome of the meeting and if a candidate, what other investigations are required. You will then receive appointments for these investigations. Consultants may also want to meet you in an out-patients appointment before deciding any investigations or to get more details from you before discussing in Full MDT.
Full MDT
Once you have had all the planned investigations and the results have been received these will be taken into a Full MDT to discuss if any surgical options are possible. In complex cases it may be decided that a National MDT discussion is also needed.
National MDT
If required add additional 2 months* For patients that are 2yrs or under or are complex cases will be discussed in a National MDT. This is when professionals discuss your case with other hospitals to explore what are the best options. This happens once a month, so in these cases time on the pathway can take a little longer.
Step three
Possible further investigations If required
Following the MDT they may decide that further tests are required to pin point the exact area of the brain seizures are coming from or what parts of the brain is responsible for certain functions (like language). Possible tests may be required like; MRI, fMRI, MEG, PET, Neuropsychology, Ophthalmology and Therapy clinic. Some tests may also have to be repeated like VT.
sEEG Investigation- If sEEG or Grid required
If following the MDT it is decided that sEEG OR Grids are required, this will go to a sEEG MDT meeting. This is to plan the operation and where the location that the invasive electrodes will be positioned in order to best capture your seizures. (see sEEG information leaflet).
Following all these investigations the results will all be compiled and it will be decided in MDT if or what are the possible surgical options. You will then be seen in clinic to discuss all of the results and if surgery is recommended, the consultants and surgeon will explain the procedure, any risks and chance of success.
Step four
Surgery waiting time
If following the discussion with the consultants and surgeon you are happy to proceed with surgery you will be placed on the waiting list. You will normally be given a rough prediction of when this will happen and then receive a confirmed date 2-4 weeks prior to the surgery.
*If have already waited for sEEG this will be taken off your waiting time for surgery.
If surgery is not an option this will be discussed with you and other possible treatments will be explored. Other possible treatments include; the Ketogenic diet or a Vagel Nerve Stimulator (VNS). You will then be moved off the CESS pathway and into the care of the complex epilepsy clinic.
